Newborn Awaits Heart Transplant

August 12, 1989|By MARK DAVIDSON Staff Writer

HAMPTON — A shiny new baby swing is wedged between two sofas in the living room of Karen Perry's 79th Street apartment.

Sometimes Perry thinks about the day her newborn daughter, Lakida Ann, will sit in the swing and play with her toys. For now, though, that is just a fantasy. The swing sits empty as the baby clings to life in a Norfolk hospital ward.

Lakida, who was born July 18, has Hypoplastic Left Heart Syndrome, a rare heart disorder in which the left side of her heart and some major vessels are not fully formed. About 2,000 infants of the approximately 3.3 million born in the United States each year have the disease, which is fatal unless extensive surgery is performed.

Doctors say Lakida needs a risky and expensive heart transplant from a California hospital renowned for such operations. Doctors at Children's Hospital of the King's Daughters in Norfolk are keeping her alive with medication and making arrangements to fly her to California within a few days.

For Perry, a 26-year-old single mother, the news of Lakida's condition was a horrible blow. One day she was holding the baby in her arms and the next day she wasn't sure if Lakida would live through the night.

Learning about the possible transplant operation was encouraging, but scary, she said Friday.

If the operation is successful, Perry, her 5-year-old son and the baby's father, Karl Maddox, will have to move 3,000 miles from their homes and families to spend virtually 24 hours a day caring for the baby indefinitely.

"People say I am so grown up, but I feel like a child. I'm so scared," Perry said. "I never thought I'd have to be going through changes like this."

The day Lakida was born, doctors said the infant appeared healthy, Perry said. "Then the next day she got sick, and they couldn't find out what was wrong with her."

She was hoping it was just a virus, maybe a cold. But after the infant was rushed from Hampton to the Norfolk hospital, doctors discovered what was wrong.

Perry said doctors weren't encouraging. They told her that most babies with this condition don't make it. They wanted to prepare her for the worst.

"I had just accepted that she was going to die," Perry said. "I could only hold her for a minute or two. I was scared to let her into my heart."

Later, doctors explained two surgical procedures that could save Lakida's life.

The first is a recostruction of the heart, which carries a high death risk.

The second is a transplant, a once-rare operation that has become more common in the last few years.

Sandy Fewell, a spokeswoman for Children's Hospital, said doctors are making arrangements with Loma Linda University Medical Center in California to find a donor. That hospital has performed 47 infant heart transplants; 42 of the babies survived.

Among the operations performed at the center, surgeons in 1984 transplanted the heart of a baboon into an infant known only as Baby Fae. The infant died 20 days later because of a mismatch in blood types.

Fewell said Lakida probably would be taken to California this weekend or early next week.

Because of the extensive recovery period, Lakida's parents probably would have to live in California for six months to a year - if the operation is successful.

Perry said both she and Maddox, who also lives in Hampton, plan to make the trip despite a lack of money. Perry quit her job at the Hampton Inn just before she had the baby. Maddox works at NASA-Langley. Perry also said it's uncertain whether Maddox's insurance policy will cover the operation.

Friends and family members have started raising money to help pay their expenses. They have set up the Lakida Perry Heart Trust Fund; donations are handled at any Signet Bank branch.

The hospital also is helping Lakita's parents find financial resources.

Despite all the pain, Perry said she is thankful that technology has advanced enough that her baby might be saved.

"When the doctor told us about the transplant, I was so excited. Before this, he told us, they used to just let them die."